News to Digest, June 2012
IN THIS ISSUE:
- Akron Aeros night
- 25th Annual Golf Tournament
- Take Steps Akron in high gear
- Movie Gala - Save the Date
- Upcoming Education Programs
Chapter Director’s Note
June has been a busy month for CCFA. Here in Northeast Ohio, we welcomed new Walk Manager Caitlin Randall and celebrated our 5th Take Steps Cleveland walk – perhaps the biggest ever with an estimated 600 people in attendance. It was a fun-filled evening with live music, great food, crafts, and games! More on the walk further down in this newsletter. View event photos HERE.
Also this month, we ramped up visits to GI offices - traveling quite a bit. We delivered patient information packets and brochures in stands for each office. Haven't seen CCFA materials at your doctor's office? Contact Terri: 216-524-7700, email@example.com and we will reach out to them.
CCFA headqaurters launched our new and improved website. In the words of President & CEO Rick Geswell, “Ten years ago, CCFA.org was launched…Today we are heralding a new era in which CCFA, more than ever before is integrating everyday life, treatment, and the power of knowledge with the most forward looking and relevant application of technology….this new site brings so much more to the table ...”
I hope you'll visit our newly redesigned website soon to explore navigation tools for local chapters, support groups, and events plus our new slogan: Providing Hope. Inspiring Action.
Lesley Hoover, Chapter Director
Volunteer Spotlight - Team Deuce
Team Deuce was established in 2010 by Dan and Jennifer Chmielewski and has grown to 20 plus people raising over $6,000 for Take Steps Cleveland! They are a great example to other walkers and teams as a result of their creativity, hard work and dedication! Here is their story:
“It was important to all of us that we get involved in the Take Steps walk as we are all passionate about finding a cure for my husband and everyone that suffers from diseases. It’s a good way to show our support to my husband, spend time with family and friends, and to raise awareness and funds. Each year we start off by gathering prizes and selling raffle tickets for our big Team Fundraiser at a local bar which includes a potluck. We learn more and more from our experiences each year and always aim to outdo last year’s fundraising efforts.
Dan was diagnosed with Crohn’s in early 2001 at the age of 24. Like many patients, the diagnosis was a long time coming-He was also later diagnosed with Primary Sclerosing Cholangitis (PSC); a chronic liver disease that made treating his Crohn’s even more complicated. In the years following the diagnosis Dan was put on a number of treatments that either did not work for him or caused an allergic reaction. Dan continued to experience a few flare ups requiring hospitalization and eventually leading to his physician recommendation to remove the diseased portions of his intestine.
After we married in 2006, Dan underwent laparoscopic surgery for a total colectomy and removal of a large portion of his small intestine. The twelve plus hour surgery was a huge success, requiring no colostomy bag and yielding remission type status for quite some time. With the exception of a hospitalization in 2009 for a possible small bowel obstruction, most of Dan’s symptoms have been controlled. Dan still undergoes regular sigmoidoscopes and continues to suffer from common Crohn’s symptoms. Dan’s life revolves around his Crohn’s disease, which makes daily life inconvenient for him, but he never complains.
I know that Dan experiences discomfort from time to time but our 17 month old, Noah, is an amazing distraction. It is hard to think about anything else when you are chasing a toddler around! Dan is a wonderful father, husband, son, brother, and friend. I look forward to a day that his life does not have to revolve around his Crohn’s disease!!”
Written by: Jennifer Chmielewski
25th Annual Golf Tournament - Online Registration Now Open
Honoring Longtime Sponsor Wm. Sopko & Sons and the Sopko family.
Join us August 20th at the Chagrin Valley Country Club. Admission options range from Dinner & Cocktails Only tickets to the entire day of activities.
Schedule of Events:
9:00 Live broadcast by Tony Rizzo & ESPN Cleveland begins
1:00 Shotgun Start
6:00 Cocktails & buffet dinner with auctions, awards *
*We are currently securing items and gift certificates for the live and silent auctions, please contact us: firstname.lastname@example.org if you have something to donate or would like to assist in these efforts.
Visit http://online.ccfa.org/golf25 to purchase tickets and for full details, pricing, and information on tax-deductibility of tickets and sponsorships. Reservations and payment due before July 16 to ensure availability of shirt size for a special 25th anniversary wick away shirt. This event would not be possible without our dedicated Committee and event sponsors.
Dr. Eric Marderstein
Lead Chapter Sponsor
Check Out Our Webcasts!
Did you know that our national headquarters has 13 archives of previous webcasts on our website? Led by IBD experts, these programs cover various topics, ranging from research to pediatric care. Our latest webcast from March, Transitions in IBD: Graduating to Young Adult Care, is now available with an extended Q&A! This program discusses how to successfully transition from pediatric to adult IBD care.
Forthcoming webcasts on these topics and more:
· Decision Making and Self-Advocacy
· Research Topics
· IBD & She II: Focus on Pregnancy and Fertility
· Integrative Approaches to IBD
· Nutrition in IBD: A Focus on Holiday Eating
Registration for Take Steps Akron 2012 is NOW OPEN!!!!!
Join us Saturday, October 6th at Lock 3 Park for our third annual Take Steps Akron and help us raise $60,000 to support community programs.
A hero is often used to describe a being that is larger than life. A hero has a special powers or skills that separate them from the ordinary— and it is these powers that are used to help bring change to the world. In the world of IBD, we witness heroic powers every day in the form of courage, sense of humor, bravery, and hope. These heroic powers will battle digestive diseases one step at a time, beginning with friends and family, moving on to their schools and communities, taking on the city of Akron, and one day, changing the world! Aislinn Frazier is well on her way!
Aislinn Frazier is the true definition of heroism. Over the past five years Aislinn has endured multiple surgeries and medical procedures that have often left her incredibly ill and in a lot of pain. She has suffered the complications of a medical procedure that caused additional pain as well as experiencing the affects of heavy steroid therapy and barium leakage. Through it all Aislinn has maintained her an uncanny sense of humor, an unwavering spirit and love for her dog Eddie - whom her family snuck to the hospital for a special secret visit!
Today Aislinn excels academically in pretty much every subject, enjoys spending time with her friends swimming and biking, and has an independence most children her age don’t have. Aislinn refuses to allow UC to take over her life, going as far as doing her own dilatations. This summer will be Aislinn’s fifth year attending CCFA’s Camp Oasis, where she has made lifelong friendships with other children her age suffering from IBD. To sum it all up, Aislinn Frazier has been chosen to be Take Steps Akron 2012 Honored Hero because of her maturity, sense of humor and unwillingness to let colitis get in her way. Aislinn wants to become a Nurse Practitioner when she grows up following in her mother's footsteps.
Take Steps Cleveland
Thank you to everyone who helped to make Take Steps Cleveland such a great day. Every step makes a difference—and the steps you took on June 3rd will truly make a difference in the lives of the 20,000 children and adults living right here in Northeast Ohio. Without your support we could not have made the day so special and it couldn’t have been done without all our volunteers, walkers, team captains, donors and 2012 Honored Hero Danny Wilbur and his family.
A special thank you to our generous sponsors: Cleveland Clinic Digestive Disease Institute , University Hospitals Digestive Health Institute, Swagelok, Janssen Pharmaceuticals, Shire Pharmaceuticals, Abbott Pharmaceuticals, Warner Chillcot Pharmaceuticals, Sherwin Williams, Northshore Gastroenterology & Endoscopy Centers, Sanson, and Frantz Ward LLP.
Just because we’re done shaking our maracas at the finish line, doesn’t mean you can’t continue to support CCFA through your continued fundraising efforts. Your online fundraising page will remain active until September 2012. For every $100 raised on-line between June 7th and June 30th, 2012, you will be entered in a drawing to win one of four football packages including, 2 game day tickets, 2 Airline Tickets with a 2 Night Hotel Stay, brought to you by Bridgestone.
Don’t forget you can still win great fundraising incentives until July 18th! Some of you are super close to meeting these post walk incentive levels:
$1,000: Long-Sleeve T-Shirt or Hoodie
$2,500: Duffle Bag or Cooler
$5,000: Speaker or Headphones
$10,000: Camera or Camelbak
We encourage you to continue to spread awareness about Crohn’s and colitis to the community and while asking friends, coworkers, community members, doctors, and local businesses to support your efforts. Take advantage of the summer months to plan fun fundraising events!
Your support of CCFA is critical and we truly value all that you do. We look forward to seeing you at future events and programs.
Second Annual Movie Gala October 25: Save the Date and Consider Joining the Committee
Mix and mingle at this cocktail event at the historic Capitol Theatre. The evening will include red carpet photos, gourmet food stations & cocktails, raffle, and the film of your choosing at the theatre. More details coming soon, contact Terri to learn more or join the committee: email@example.com.
Upcoming Educational Programs
Treatment Approaches in IBD: Options to Consider
This is FREE informational presentation and interactive question-and-answer session that will help you sort through treatment options for inflammatory bowel diseases (IBD). Learn more about: risks and benefits of medication, surgery, and integrative treatments in IBD; impact of treatment adherence on disease management and quality of life; and talking with your health care team about your treatment plan.
September 4, 2012 at 7:00 pm
William Shaheen, MD
Akron Digestive Disease Consultants, Inc.
Summa Health System, Akron City Hospital, Professional Center South
Basement Auditorium, 55 Arch St, Basement Level
Akron OH 44304
Parking is available in the Parking Deck that is attached to the Professional Center South, 55 Arch street.
The entrance is off of Upson Street.
Online: Akron Treatments Program
Nutrition & IBD: Choices for Adults and Kids - Save the Date
This program will take place on Tuesday, October 9, 2012 at 7:00 p.m. in the Rosenberg Conference Suite, at Ahuja Medical Center in Beachwood Registration and more information about this program will be available soon!
IBD Day on the Hill
Celebrating our 10th year advocating with patients on Capitol Hill, CCFA held its annual Day on the Hill, May 30th- 31st. Many of the advocates were children and their families, some as young as three. Groups of advocates attended over 100 meetings in total to share their IBD stories with Senators, Representatives and legislative staff.
On Wednesday afternoon, families participated in Youth and Parent Forums, put on by the National Youth Leadership Council. After the forums, Health and Medicine Council of Washington, along with the American Gastroenterological Association (AGA) held a legislative briefing, highlighting CCFA’s legislative priorities.
These priorities include:
· Congressional Crohn’s and Colitis Caucus - Reps. Ander Crenshaw and Jesse L. Jackson, Jr. invite all House members to join the fight against these devastating diseases by becoming a member of the Congressional Crohn’s and Colitis Caucus. The Caucus works to promote awareness of IBD, the need for expanded research at the National Institutes of Health and Centers for Disease Control and Prevention, and the importance of accessible insurance and disability coverage for this vulnerable patient population.
· The Part D Beneficiary Appeals Fairness Act (H.R. 3613 ) – This legislation, introduced by Rep. Hank Johnson would allow Medicare beneficiaries to request an exception for any drug included in any tiered cost-sharing structure within a Medicare Part D Prescription Drug Plan formulary.
· The Patients’ Access to Treatments Act of 2012 (H.R. 4209) – This legislation, introduced by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA) limits cost-sharing requirements applicable to medications in a specialty drug tiers to the dollar amount applicable to drugs in a non-preferred brand drug tier for private insurance.
· FY 13 Appropriation Requests: $32 billion for the NIH, $680,000 for the IBD Epidemiology Program at CDC and $50 million for the Department of Defense Peer-Reviewed Medical Research Program and inclusion of IBD as an eligible disease.
On Wednesday evening we held a Congressional Briefing on Capitol Hill which was attended by the Crohn’s and Colitis Caucus Co-Chairs, Congressman Jackson and Congressman Crenshaw. On Thursday advocates met with legislators to share their stories and impact of IBD on their lives.
Team Challenge, Destination Las Vegas
We will prepare you to run or walk a half-marathon while helping raise funds to find a cure for Crohn's and colitis. When you join Team Northeast Ohio, you'll meet great people, get into great shape, and test your physical and mental strength with a destination half-marathon.
Learn more about our Vegas Half Marathon at an upcoming info meeting:
- Saturday, August 4th, 8:00 a.m. - Mojo's Coffee & More, Bay Village (includes coffee)
- Tuesday, August 7th, 6:30 p.m. - Pub Bricco, Akron (includes happy hour apps)
- Monday, August 13th, 6:30 p.m. - Whole Foods, Woodmere
- Wednesday, August 15th, 6:30 p.m. - Red Hawk Grill, Concord (includes happy hour apps)
- Tuesday, August 21st, 7:00 p.m - LA Petes, Independence (breakfast included)
- Thursday, August 23rd, 6:00 p.m. - Hard Rock Café, Cleveland Kick Off Party to Follow
This is truly a life-changing experience!
Night at the Akron Aeros
The Akron Aeros invite you to Canal Park on Sunday, August 12th at 1:05 pm to enjoy a game and support CCFA and the Akron JCC at the same time. This will be an amazing opportunity for us to raise awareness of digestive diseases at the game – via informational tabling, CCFA information up on the jumbotron, and we hope …a big audience presence in their CCFA gear. For tickets contact Todd Rockoff at 330-867-7850 or firstname.lastname@example.org.
Be our Fan! Follow Us!
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You can also follow us on Twitter or join the CCFA Northeast Ohio Group on LinkedIn.
Thank you to our valued partners:
Lead Chapter Partner